Sophie Jayawardene profile
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[00:00:00] This program is brought to you by pride nz.com. [00:00:05] My background is I am Zimbabwean from the southern of Africa. I came to New Zealand in 1989. With my two children, my husband is teachers. And in 19, we came in 1980. In 1989, I was pregnant, it six months pregnant. Kidding, twins. And during post procedure, I found out that I was HIV positive. And there was nothing to be done. From that moment. We we I was central Australia to terminate the babies. And so I did come back to New Zealand in that was the beginning of my whole life, I should say. And [00:00:54] just to break in there, how did you react when when you were told you were HIV positive. [00:01:01] I was taken to a hospital in Gisborne and officials that we couldn't meet us came over there in told us how serious my situation was. I've never heard of AIDS, my husband didn't even have AIDS. So we this official in a little room, which they basically say to us, your children you're carrying, carrying the same virus in your device, you're kidding kills other people. And I was the first in New Zealand to hit a virus. So at that time, the reaction was how do I come to a place I thought I was gonna love and flourish and bring such a horrible disease. I was frightened, I was really, really scared. And we tried to see if we didn't go to England to give birth to the babies in bring them back in. They said we can't bring them back, then regression won't let us bring them back in. And because of my situation coming from Africa, we come here to look for good life. We didn't had time to think about it. But really, we knew it wasn't an option to take the other two, we had already picked Africa. So we decided to do what we were told which we were told in this immediately in that conference that we were going to go to Australia, someone from the AIDS Foundation was going to come and conduct us or our arrangement for traveling already arranged. So I was sitting at Australia while I was in Australia, at the Sydney Airport, I was made by a man who took me to the app point points clinic in Sydney. And I had to termination there and he came back to pick me up. And this was my first time I've met a gay person. I've never met anyone who's gay. I never really know about gay people. But what happened while I was in the car was something that not does not happen, where I come from. To start with, they were very lovely to me. They kissed me they put me in the car. And they looked at each other with this muscle laughing gesture that I didn't think two men could look at each other like that. They took me to their house which I drew I can draw that house was so beautiful Russell claim and fed me put me in the bath that Randy bad told me to live on my page and everything which was so against my African heritage. And men don't touch women's pads in all the things they did. It was like hitting a nest but I was with a couple. But this time I understand that I was being looked after by gay people. And I also didn't understand why they were looking after me when my doctor was not going to touch me. My midwife was not going to touch me everywhere in New Zealand was not going to touch me. And so the next day they took me back to the airport and I flew back to this point where I was living. From that time really I tended to have lost sense of who I was. I've lost my babies I couldn't cry about his mind. I couldn't tell my neighbors about what happened to those babies are scaling was quite a big lady. And we just didn't know what to do. And we never no one ever came back from that panel. To help us we give him a number to call when lady in that would mention NM kosher Daniel fantastic week in the MJ during the pandemic, pandemic and Judith Ackroyd, she was my only contact if I got really sick and want to see someone. And from that time I just become an ill person. I was diagnosed with liver cancer which later on I was found that I didn't hit live I can sell we lift Gisborne move to Atlanta, we left Africa tiny moved to Oakland just looking for where there was coverage. We nobody can find or know who we were. It was very difficult. At the end of the day, I couldn't look at my husband. I couldn't talk to him because the first time we're told with HIV, they told me from now on once you have to use condoms with you a head of sin. So even our life love life goes straight away on the day I was diagnosed baking Oakland, I tried to go to university to do Teachers Training. I just dropped in college install, wondering what am I doing? I'm going to die anyway. So a year later, I quit my training into left my husband started my own business in African hair braiding hair extensions, watching my children grow thinking what was going to happen, but something changed during this time I'd become a city girl. I speak it up that I have to survive. I figured out that I have to look like everybody else. I figured out that I can't look said I can't look misery. So I went to the gym and I look great. I went to Pat, I just did everything I drank, I smoke, [00:05:53] no become someone else. [00:05:55] And from that time I live like someone else. But in the night I was someone else again, daytime hours in this lovely business mother. In the night I was this. I used to think I'm an alien. And I used to think that the powers that I felt during the time I'm isolated could transform me, I could feel that I can transform into a huge, light, alien. And I would come back to the people and said who I am because I really wanted to tell people that Im Sophie. You know, I'm someone's daughter, you know me family. But that was just for me to do when I'm in bed when I'm by myself. So it was alone, 14 years before I fell to the ground. And I went to Oakland hospital which at that time I was really scared because I knew that it was isolated. And then everybody would know that I'm HIV positive. Earlier on we used to be coded. But I was surprised that when I went to the hospital this time I was in quoted many more so Phaedra ordered, and the doctors were no longer wearing gloves. We're talking about mittens was actually dying when I take that one The Doctors Hospital and they were not wearing gloves anyway they talking about medicine. So let's try this in. Let's try this anything this makes sense. Something came into my head that maybe I was just neglected. Nobody followed me up for 14 years. Nobody knew that I existed in for 14 years, I didn't know that there was new medicines that did come up. And it took a while before the medicines kick in. And when I could talk in think straight I started writing a journal to live to my children. My daughter was 18 by this time when I was diagnosed was three and a half. And I had prayed that if God was going to take me Can you take me when my daughter was 18 so probably that's why I was so sick. And I wouldn't believe it was so scary that I asked to die with my daughter was 18 now my daughter was 18 I was actually dying. And let me tell my children was killing me but I couldn't come to say it. I wrote in wrote every time I wrote what I was really feeling. I felt better and the doctors were amazed. I think I wrote about five chapters while I'm in the hospital. And every time I wrote one I feel way better in by the time I read Proverbs chapter four, I couldn't walk. And I decided to tell my children I didn't tell them about what I was writing but I just told him I took them home and I told them that I was dying of this in this and it was really sad to think that my children need this cookie cookies they go to expensive schools and live in expensive house mommy drive expensive car get surely should that tech secret. They cried both of them. My oldest son was 22. And by this time, they all cried and just told him I'm not dead yet. So here so to see how things was gonna go. [00:08:56] So you were diagnosed in 1989? [00:08:59] Yes. [00:09:01] This was about in 2001 when I got really sick. [00:09:07] Can I just take you back to those early years like 1989? And you initially said that you were the first in New Zealand? What does what does that mean? [00:09:18] When I was told by my doctor that the government officials are going to come and talk to you about this is just after I've been diagnosed, they called us and said we need to go to this one hospital with officials we're going to be so it me and my husband who went to the hospital. And while we they had a panel of eight people, I do admit that very well. Because the people were sitting in front of us, eight of them in me and my husband on the other side was just one room. There was no other rooms. There's one room in my gynecologist was there, Shelley Robertson, the only person I remember to up to today, I don't remember the rest of the people. And they told us what we had they said you do know you have got HIV AIDS, they didn't get unquote, HIV. They say you've got AIDS in the we sort of nodded our heads. Do you know what that means? And we're sort of nodding our heads not answering, they said that means you're going to die the next 18 months. [00:10:20] And when you're nodding your heads, you don't [00:10:24] don't really know what we have, you know, I was thinking I don't know, because that had just hit it like a two weeks prior to this. So I didn't know what I had. So we're told that this disease will kill you didn't the next 18 months. And the problem with me was I'm carrying a baby, you know, two babies, you're pregnant and your babies. Therefore the seven disease and if they come out, they'll do the same thing. They'll die like you. So the best thing for you to leave a little bit Loma, beyond the 18 months, they have to get rid of those babies. Because we're not getting enough information. Without this babies, we're going to die as well or it's gonna die. So we did you know, anything that people were looking at with the only solutions, I guess would give us the solutions. But at the same time when they really introduced what I had they said you do you know you've got AIDS. And we know the ideas because now by this time My doctor told me Do you know you're the only the first one they use the words face to one in this country? Who I didn't. So we just looked strange. I don't know. The best thing I would do describe this scenario is you know, when you have been caught trying to sneak in a country. [00:11:42] That's how I felt. I felt [00:11:44] like I had done something. I felt like I was being judged. I was in front of a panel who judged me for killing somebody that I killed some but that's how we felt, probably to anyone who had been in that room. They've seen my frightened face. I was really really frightened. I didn't know what to do. And so we didn't have know what to do. We left everything to the panel. But everything in that moment was already arranged our tickets were arranged where was going was arranged. If we didn't take those options, we have to leave the country and not come back. That was the immigration so I don't know if anyone in that panel was from the immigration we live to we went home a couple of days later I flew to Oakland in get the abortion gun Tim nation It wasn't an abortion this time go through a baby's determination Dan and the only people I ever had contact with cardboard means like we do and someone lost their babies wasted two gay men that I couldn't even remember the names the minute I left and I never made them again I never called them again I just went home and disappear somehow I got my life back by 2000 I was starting to feel beta and I decided I was going to rewrite my book properly so I wasn't rewriting I was reading it again and in try to make it sound properly all the spelling changes the spelling error but I did write about three times so I find people who are advertising whenever publishers I say to them and want to publish my book this year New Zealand they said what's in your book? And I tried to hesitate But I have to tell them much my book now we don't publish this kind of stories and then I'll find another person they now ask them to publish books and I your publisher know who I said I don't know what do you mean? Do I use something I said like what are you a netball player or other people I said no, no we don't publish that. So good really frustrated. I finally found a publisher in the states who does self publishing and I published my book which is surface well Jenny's of glow saw it this time I changed very much because my my focus was like if it didn't die the last four years I've lived in hospital that means I might have another five years now to be able to tell my story. It wasn't so much of telling my story what's in my story. I don't see it being relevant. what's relevant in my story is these kind of things I suffered [00:14:32] loneliness isolation [00:14:36] feeling like you don't exist yet one person who live among others I that's what I called myself. I either called myself mental because I was a normal because it's the normal people in me or episode Alyssa month and that's when I'm walking around other people. I feel I'm walking among them but they can't see me they can feel me I live like that for so long. And I said thinking by this time you know the world is a big watch. I've been watching the world disappear been watching the virus you know terrorizing people I watching people being buried in mass graves in now. So here. I think when I realized I wasn't the only one. [00:15:25] I said thinking do everybody felt the same way as I felt. [00:15:30] Or because what happened to me was different from the other person. It still didn't make sense. What happened to me happen to me because of the situation I was in, I was pregnant. And a woman that detected the virus itself is good a stigma that makes us misery. I thought like if other people don't walk around in the woods, for instead of courses, that meant it must be filling it in that really wanted to go and share with them. We just had this thing and distilled the hottest today, people don't come out into the good of oros people don't come up and say hey, I'm feeling today. And that gives me a different strength to why I'm here the papers for me to be here today. Because I found out that just any secret. Living in in a secret we all carry something within yourself causes illnesses, that illnesses and I normally say cancerous things that you keep deep down. why I say that. Because when I was talking to myself putting on the paper, it was coming out of me. And the last two years that I actually wake up in the morning and make it my business, to talk to the world into them how I feel. It's almost like everything was taken out of my system into something I took about. It's like it's not. So I really believe that the path of those people that are like me, positive people may need a shift from a behavior if they had behavior to start because they add people outside who are not positive, that might not accept us. But if you are doing it for yourself, if you want to live longer, if you want to live happily, you might have to change, change the attitude, it's actually required, because nothing's gonna change for positive people anymore. Those who are outside who are not positive people. From what I see, from what I saw, then, when I was living the first line, which I talked about, I talked a lot about my those days in the fast lane in my life, you know, I picked up guys, you know, I know how to pick them up. I you know, I end up knowing who's sick and who isn't. When I'm looking at someone said you must be HIV positive. And I should do that today. And I'm not wrong. Maybe 95% I am right. I can pick them up. So I used to go out with these people are like, all like places I like to hang out I would not want to hang out in a taxi place. Because now become you know, the city girl. And I started knowing how people think in behave when it comes to sex. If I look great, and I know how to talk, I'm likely to be picked up by a guy than the lady that is sitting there that is healthy, maybe looking a little bit fluffy. No. And I realized the ignorance in it all. Because it goes I look like that someone who was coming to me said Oh, you don't? Where are you from? I said I'm from Africa. Don't you like this? No is there as a real? [00:18:51] I said, I don't know. [00:18:55] Now, this was the fast lane way I learned the ignorance about sex, how people catch all our people wake up in the morning and said, My God, what happened to me, we go out there we in our way of living, we don't understand that. We live in a swimming pool. We all swim in there. And that's how one person thinks I can do that. Oh, I hang in points of view. For instance, you don't find people were HIV positive. I hang on. I hang out in the sand. I hang at the waterfront. I hang out with the real people. Because I'm so real. It's only that I'm no longer part of you guys. But one thing I realize we all need to have sex and sex was part of the same. And how could I run around and said Oh no, I my gadgets are not working when I want to be filled. And one thing I also recognize what I thought I needed some love and I to steal it. How do I steal it? I am nice a local, then the guy Kairos me kisses me do things to me. There was time in my life. The first time I had two sides. I like to leave that part. I was like two years of the slip as like my husband. And I was a real escape. I didn't want you know it because I knew I could give it somebody else. But I was going out I started becoming someone else. And drinking smoking. I never done that in my culture. No but smoke or drink in my family. I'm talking about the women we live the woman life. But now I'm an alien. I'm just, you know, living, they went to survival and just my children grow. I went to the ad there was a by or opposite TV one. And there was in there. My girlfriend. And this gorgeous guy was just so gorgeous, entire. So he comes in and all these girls were feeling jealous of me. You know, a few be as you know, you relax a little bit. And you know, I didn't know what to do. So he took me to his place. And I go there and he went so he poured a glass of wine. And I wanted to say no, you know, but I couldn't say no, because I made it positive. I just said no, no, no, no, no. Before I know it, you know us on me. I do remember that four days after that. I felt like I've killed somebody. I prayed to God. I said please God, not him. Please, please, please, please, please. For years, I felt guilty. I was so paranoid, I had to find out what was the symptoms, who just looked around me to think oh, my God, someone knows what. And it was just in my blood. But I thought someone was watching me 24 seven. But I couldn't stop living. We all need to live in that way the subject comes back. What are we going to do next? When this disease comes back? Another one of these thoughts? Do we just go killing people squatted? What do we do with them? Do we talk about we don't want education in school because we don't want to talk about the disease because we don't want our children whose child doesn't want to know about this, when I'm telling you where where I was before your child was there. And these are people who are quote in the influence of ignorance, or ignorant of influence at one way or another because there's so much people that f1 power to influence the world and those who doesn't have get caught in it. And I saw it all with my eyes. And the first thing I did, that made me very angry that I spent all those 14 years watching my children on a trip, they were growing, they were going to those places, I brought them up to be flush to go to those flush places. But those are the flesh blood cells going as well. And that watch them. So I said not as long as I live, I am not going to see any child sitting on a trip, just because they are people with influence. And it's all ignorance because they think they're protecting our children they not because what's out there is not as good as it looks. So my duty is, as I see it, is to make sure no child goes without understanding what's happened in a real world. My duty is children should understand, stigmatizing other people. Those who are difference those who come from different backgrounds, those who come from different sexual orientation does not make them any better. It only leads to what I call ignorance and ignorance faster. Ignorance kills faster than a car crash. [00:23:56] I've seen it all out there. And I'm quite happy for people to ask asking me what is that? I'm trying to say? What is it I'm trying to do? But so far, I am happy because I've met so many wonderful people that I didn't think they existed. Everywhere I looked, I just saw people that are horrible. Every person was horrible. As far as I'm concerned. How could I not even grieve? I went to see my doctor a couple of years ago. And I say I don't know, I'm just crying. I just cried, cried for days and said you're grieving. Just go home and grief as it how do you grieve? In my country, we always sit together and said, Oh my god, you know, today they said, Oh my god, I'm sorry, know what HIV, we actually do that. So we just watch you we help each other to go over HIV. Now in this country. If you told people with HIV, you can't go to the supermarket people people to my car. So in standing next to the milk fridge. That paranoia, you know, I went I went to school last year to high school, telling my story. [00:25:08] I was surprised how young people [00:25:11] came up the I Jesse hearing my story, young girls cry coming to cuddle me up I wasn't crying I just telling what happened to me cuddling up, you know, which is what should have happened then, rather than everybody killing each other. So as a person who did I didn't go to school to do medical, all these things. I only know talk about what happened to me. And what I would like to achieve or how I would like to be used to the society. [00:25:43] So for you when we're thinking about the stigma and discrimination, is that what people are doing, outwardly to you? Or is it more internal? Or is it a mixture of both? How is that balancing? [00:25:58] After I recovered, which accorded [00:26:01] I had a good look at what it is that I was suffering. I was suffering from what was going internally. Because if I really think about it, nobody knew except this panel, that I was HIV positive, but the whole world didn't. So because of this, the disease or the virus. I was paranoid. And the paranoia I suffered becomes the stigma was stigmatizing me was being paranoid. I thought everybody was watching me if that is what even today a lot of people are suffering. The stigma that I have experienced now that I'm out, this next to zero is totally next to zero. And then I say this because it's true. The minute I say to people, I am HIV, I don't get paranoid. The paranoia is gone. I don't think like people looking at me, it just will disappear. So it for me it was an internal thing. No, it's no one so far has come to me through my daddy, for HIV. Actually, I get a stigma. Sometimes when people think I'm gay. They do. They say, Oh, are you gay? You know, I don't know why they asked me if I'm gay. But I get that. And in the public, sometimes, especially with heterosexual people, because I hang around, or most of my friends are gay people in a gesture like that is to a lot of work there for people to understand that. Either when someone's sexuality is different, how we feel about them. That's the evil I'm trying to talk about that the ignorance I'm talking about, because people are people. When I was feeling that I would HIV and those people don't have I totally separated myself. But when I came back to my senses, no, no, we are all the same. We eat the same, we think the same with the same heart. So because we separate each other according to what we don't like, or what we fear, or what do we don't know. We cause other people to suffer that stigma. So people are being stigmatized in the sense that sometimes you hear people talking about how HIV affects other people in an ignorant way. [00:28:20] Like you get it from kissing them. [00:28:24] Or, you know, you're going to be skinny, or that skinny girl looks like she's got AIDS, those kinds of comments, stigmatized, those who hit were HIV positive. But I have not personally, if someone can straighten my eyes instead of with AIDS. I actually HIV comments like my god, you don't look like put aids in I say, a good this 10 years ago when I started practicing safe sex, safe living. When I need to guys, and I said oh, you know, I'm HIV positive. It was very hard to set the trend. But I've made up my mind, I'm going to start the trend. And he was it if you like it? Yeah, aim. If you don't, they see all the comments I get from all those people I've met mouse, those of you look fit to you, they would say you look very nice for someone who are this? Oh, you look very nice. Or you look very good. And I'm thinking, do I look very good for someone as good as or die looks very good for free. As a woman. I don't know what they mean. But whatever they mean, it does environment. I've told them. rejection is normal. So someone said Oh, no, thank you. Not mindef said no thank you to me. [00:29:36] So how, how do you have that conversation? How does that conversation start when you meet somebody? [00:29:46] self respect. I think I love myself. I love life. And I love to be loved. And I want to give love. And because I've got that in my back escape when I meet somebody, I normally attract those people. Now the conversation for me starts when someone say they like me, they don't just start saying they like you know, they flirt with me they do this, I go along with that. To sit in stained waste point where I made myself that is not a good idea to go to jump into bed and say do I in there already. So I have ways we are making a day to get to know the Christian faith will not leaving too long. You know, three weeks later, this is so in love with me the new town that does you know, maybe the second date on a coffee seed like look, I you know you like me. And this is where I am. And I tend to find that those guys I've met along the way. They've actually said that attentively. Listen to all this in half the time I have to end up telling my story again, over and over how I go to eat with the my kids have quoted in RY feel in Westwood couplets I take if they stay it was meant to be if they go It was meant to be I have been into relationships in the last eight years, both lasting. For years, the other one is still going and been for enough years today. And both people I've been dating and negative. So it depends how you can go in any relationship if you emotionally attached at already, HIV or not. If you're HIV and thinking someone won't love you, it's still because you haven't come to terms with yourself in the virus you live with. And what I found out which which I talk a lot about in my book, my book I wrote is you need to have to go to a point in time where you make peace with the virus you live it, it's going to be part of me and someone rejects it that you have rejected me. And I'm very, very much on that in everybody who knows me knows that. If you reject HIV, anything you say about HIV, that is negative, you've actually insulted me in because I live by that. That means everybody who comes to me have to live by that. That's how we make our relationship. [00:32:18] When you're saying that, when you meet guys in the venue, talk to them maybe on the second or third date and kind of go through your story. Do you get tired of having to tell you a story? [00:32:31] I found [00:32:33] that telling my stories, no. So tearing, [00:32:37] that's a fine found that if the person at the end of it sort of walk away. [00:32:42] The first time I didn't probably [00:32:44] wasn't a big deal. The second time wasn't big, too. But the date time I thought [00:32:52] that the rejection everybody else saw but I [00:32:54] thought it on a different level. And that it's quite hard. It's it's something there you had to have to tell someone? Yeah, I feel I felt like I'm begging them to love me. Because if I was an HIV positive, I wouldn't have to tell them my story and story again. But I've accepted who I am. I'm going to tell you over and over again because it's part of the deal. [00:33:17] So I'm just trying to get in my head the the the leap between the the first time post HIV diagnosis that you had six, and you felt really paranoid to Now where were you there's a lot of acceptance. How did you get from that kind of paranoia to that acceptance? [00:33:40] I think I used to think of myself as a data person. And in a thing, a lot of us were HIV positive filled data, when you get the virus food that HIV is attached to organs. When someone say the word HIV, it's immediately the thing you go through sex and sex is to do with my private parts. [00:34:04] Now I thought did all the time, [00:34:07] to the point when I accepted that it's, I'm not dating. [00:34:12] HIV is me. And [00:34:15] I'm reading all the things I've read recently, [00:34:19] and [00:34:20] helps. But then when I was starting to take my meds in I'd already made my mind that was I wanna leave like, how did I go the transition from being paranoid or not enjoying sex or feeling yucky to add always love sex, I know that. But there was a shift to definitely add the behavior even while during the sex I was more open with my body or flushing my body because the person I am with knows who I am. And I think that's the most important thing when you start loving yourself of who you are and what you hit, and the other person knows what's going on. Then you can share and enjoyable sex. In that sense. I just changed something just flicked and I was no longer paranoid about why am I didn't feel it in myself. Sophie came back as a woman. Yeah. [00:35:17] Can you talk about how mids and also how you're kind of emotional state how they they work together or don't work together? [00:35:28] pretty much always together. And I like email. The this the syndrome is immune syndrome. So if our image doesn't flourish in good environment in the environment is provided by ourselves, we've provided that our soul by waking up in the morning practicing being happy. Don't just practice it be happy, for real, and all those positive thing you do for yourself, helps your immune to, to work with the meds should say when I think of what I do for myself, every day, a thing that complement the medicines I tag, and it works together. I really believe that it means works. I really, really, really believe that. But I think when I look at other people were HIV positive in myself in my attitude, I look way of them. I my appearance is different. Everything I do is different. My energy for life is different. So your attitude helps in this scenario, because it's your immune system, your image will only flourish where there is positive things. Yeah. [00:36:41] When you reflect back on the diagnosis and 89 and how you were treated, and how, how you weren't treated by people around you. I mean, what do you think now about about that time? [00:36:57] I'm still in conflict with that. earlier on, I mentioned that if the same disease comes, [00:37:04] how are we going to treat ourselves [00:37:08] and I am I would see that the same way because nothing has been being done. When I was treated with secrecy and being hidden, I felt I was being hidden because someone surely knew existed. Someone actually knew that I needed to be taken to the doctor, someone surely knew that I was just me and my children. I didn't have anybody. But we were just hidden. [00:37:31] That's how we felt. [00:37:33] And what's happening today those people who might have been given good services was our doctors are fantastic the needs of the services are there but big talk because we talking about emotional in being recognized with stigma stains, nobody comes in talk to you we will people sitting offices, just doing paperwork in writing what the mid since i doing that doesn't wake on social level, social level for well being, it's actually hitting a contact, someone contacting someone talking to feeling like you have good conduct this nothing is too very secretive. Nothing has changed. We as to AHIV people as soon as there is this movement that is going as an alcohol anonymous. There's a movement that's happening in around the world that is not happening in New Zealand, where everyone is actively helping themselves to say we exist. [00:38:34] In my book. [00:38:36] I wrote gay people [00:38:40] they gave me the courage to fight for my life they made to the beginning get up in the morning is it Oh, I'm gay Tough luck. And when I get up into that with HIV Tough luck. I wrote that in my book for a reason. Because somehow we feel like just because someone doesn't want to acknowledge us we just go away they tell us go in this to happening today. We've been told that you know it's everything's fine go to your doctor to doctor will give you some medicines. What about what's really happening that is to very much the same is specially in the heterosexual [00:39:16] sector. [00:39:17] Because when I do hang out or I go and visit these people talk to them most of them knows who I am. They definitely are thinking Are you going to tell someone else that you know me that fear when I go to my colleagues that I work with they are very much worried about me talking about aging people with AIDS in the public and as defeats who I am what I am about is giving our people HIV or not in the community if they are well being balanced [00:39:52] why how does that work [00:39:54] when a woman leaves with a virus don't go to children's school don't [00:40:01] they don't do anything they just go to work they come home did [00:40:03] what sort of children are coming [00:40:05] out of this [00:40:08] children that if we're a secret or they would a behavior of a secret to person and all that is causing so much in our society? So what happened to me then was probably very not nice. [00:40:20] And I understand at that time, [00:40:23] I really do understand but I don't understand today I don't understand today why people are still being secretive of saying I know Sophie she's HIV positive on maybe let's go in as software to begin to about things on maybe let's put this virus on the open and talk about what's happening into and where we at it on a very high level to make sure no one more child [00:40:49] tomorrow have the virus the people [00:40:52] I've met in the community recently that gets it been diagnosed I look at the in the I ended with the same pain ahead 26 years ago the same pain a grown up men the other day he came to see me and I just said watch [00:41:11] him and I started to cry [00:41:16] a grown up many cried and I'm thinking if they've read that is medicine you know dying in Rwanda crying there's nothing that dimension are they Why are they crying because the information is as bad as it was then when you go to HIV, the alien is right inside you. [00:41:31] That's why people cry. [00:41:35] When someone has been told you good kids are you run home straight away until your people they took myself Watkins and if we're currency will be fine. It's okay. A lot of us we don't go into nobody. And that's when we go into what I was telling you earlier on. I'm going to die anyway, let's put my clothes on and just unleash among others. In those people, among others, as there's a life in our society. We don't see them. They don't have a different color. They actually look gorgeous. They are out there. So how are our children going to fight the virus? How our children go, is it okay, our generation doesn't need this virus. And on the other side, we are so segregated by saying the virus come from sit in groups of people [00:42:25] that pisses me off. That's not true. [00:42:29] You go to Africa is there you go to East America wave I call is there it's everywhere. The virus is everywhere. When it's an illness is good, nothing to do with people. And for me if we can all actually actively talk about this in educate everybody in those who are already HIV positive to be looked after emotionally because that's where we are it HIV causes isolation. Isolation causes is [00:43:01] mental illness. [00:43:03] Because I said there's only there's two things with that people are discriminating you are you discriminating yourself, you isolate yourself and you go to a very dark place. And they are the mental illness comes you [00:43:15] might not get the gun and kill people. But you are not a fit [00:43:21] citizen [00:43:23] in a way, [00:43:24] anything you're not to drink this you putting the extra in putting that the I know you just mixing it just making tea. That's not what we want. We want to help the world beings in the society in this another way of helping those who have been already caught into it. We can't forget them. There people are getting so frustrated that they stopped taking their medications today, [00:43:45] just because they said I'm just gonna die. [00:43:48] I can't be bothered these times myself. I wake up in the morning I look at my tablets. Because I don't know if the recent ones we have with the new one, which is one guy so good. My old one. So I would five in front of me plus my blood pressure. Breath my mode of items I would a cocktail of my tablets in the morning. Somehow I just wake up one day, I don't know what causes it. And I look at them in tears comes down. [00:44:15] And sadness. I just don't want to take them but I have to take them [00:44:17] because if I don't take them what happens [00:44:19] to me. [00:44:21] So people like us, we still going through those emotions that we need to one to one, we just put it our house given tablets and forgotten. Probably that's what is the same as it was before. Yes, we don't die anymore. The stigma is still very much alive with a stigma for other people. It's actually stigmatized by the if you said the society, I don't agree with that. Because the suicide and just ordinary people, I just really pissed that the thing is, we are stigmatized by the people make laws. Yeah, [00:44:58] the people will make laws stigma us. Because how [00:45:02] come there's no money to advertise this? You go in Africa see boards of HIV on boards, we see children with HIV. See, adults with HIV, you see the word HIV every on billboards. And they don't have meant by food where they doing that we're going to be doing the music or because we adjust to wonderful diseases in our country. Or maybe people want to come but our children and our people are dying here in this country or suffering. And that I don't agree with and I'm not a politician so I just do what I do and talk to people you know, look after yourself. look after children love each other, cuddle each other because that's all what we have left.
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